Caregivers' Contributions to Heart Failure Self-care: An Updated Systematic Review.

BACKGROUND: A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. OBJECTIVE: The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? METHODS: This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. RESULTS: Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. CONCLUSIONS: Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice.

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.

BACKGROUND: Frameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies. AIM: To summarize conceptual and theoretical frameworks used in palliative and end-of-life care research studies. And to synthesize which of eight domains from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care (fourth edition) each framework belongs to. DESIGN: Systematic review. DATA SOURCES: Four electronic databases (EMBASE, the Cumulative Index to Nursing and Allied Health, PsychINFO, and PubMed) were searched from July 2010 to September 2021. RESULTS: A total 2231 citations were retrieved, of which 44 articles met eligibility. Across primary studies, 33,801 study participants were captured. Twenty-six investigators (59.1%) proposed previously unpublished frameworks. In 10 studies, investigators modified existing frameworks, mainly to overcome inherent limitations. In eight studies, investigators utilized existing frameworks referenced in previously published studies. There were eight orientations identified among 44 frameworks we reviewed (e.g. system, patient, patient-doctor). CONCLUSIONS: We examined palliative and end-of-life research studies to identify and characterize conceptual or theoretical frameworks proposed or utilized. Of 44 frameworks we reviewed, 21 studies (47.7%) were aligned with a Clinical Practice Guideline's single domain, while the rest two or more of eight guidelines in quality palliative care domains.

Adaption of the Casey-Fink Survey Tool for Nurse Residency Programs: Making It Relevant for Hospice and Palliative Care Nurse Residency Programs.

OBJECTIVE: This evaluation project focused on assessing the content validity of an adapted version of the Casey-Fink (CF) Graduate Nurse Experience Survey, which is aimed at measuring role transitions in nursing. BACKGROUND: Registered nurses in the hospice and palliative care field need training and confidence to be proficient in core skills including communication, interprofessional competence, and clinical skills required to care for the dying patient. However, a review of the literature revealed a gap in the availability of survey instruments to measure the confidence of nurses entering the field of hospice and palliative care. METHODS: Ten items from the CF survey were revised by the project team and then evaluated for relevance by a group of 7 national hospice and palliative experts. The content validity index (CVI) was used to determine item relevance. RESULTS: Item-level CVI (I-CVI) calculations ranged from 0.57 to 1.0. The 8 items scored between 0.80 and 1.0 were retained as written. One item required further revision (I-CVI, 0.71), and 1 item revision was eliminated (I-CVI, 0.57). Experts also suggested 5 additional items in the original CF-survey need modification. CONCLUSION: The adapted CF-survey tool is ready for further psychometric testing, and next steps include administration to a new sample of nurse residents to determine construct validity.

Readiness to Plan for Aging and Frailty: Examining Contextual Factors.

As older adults live longer, individual and societal efforts must be directed toward strategies to promote healthy and successful aging. Planning for aging and frailty offers an opportunity for older adults to optimize their well-being and proactively prepare across their aging trajectory. The current study evaluated the relationship between contextual factors (functional status, frailty, health status, social support) that influence older adults' readiness to engage in planning in five domains of aging (communication, environmental, financial, physical care, cognitive) through the transtheoretical stages of change. Results showed that factors influencing active planning include older age, vulnerability, living situation, and social support. These results add to the discourse on future care planning through a comprehensive approach to planning across a life course perspective, while highlighting the importance of future research at individual and societal levels. Gerontological nurses are well-positioned to lead planning efforts for older adults that promote well-being, patient-centered care, and healthy aging. [Journal of Gerontological Nursing, 49(2), 27-35.].

Understanding and Optimizing Family Caregiver Participation in Dyadic Research.

BACKGROUND: Research to understand self-care behaviors increasingly engages patient-caregiver dyads. However, collecting data on dyads requires both members to complete the research protocol, potentially resulting in biased information if caregivers who do not participate differ from caregivers who do. OBJECTIVES: The aim of the study was to examine how recruitment conditions and patients' appraisal of dyadic engagement in heart failure management are related to caregiver participation across two research studies. METHODS: We used logistic regression to examine whether recruitment strategy and patients' responses on the dyadic symptom management-type instrument were associated with caregivers' participation. RESULTS: Caregivers not present at the initial recruitment were less likely to participate in the study. Regardless of recruitment strategy, caregivers were less likely to participate if the patient indicated primary responsibility for heart failure management. In the restricted recruitment study (recruiting both dyad members simultaneously), caregiver participation was significantly higher when patients selected a collaborative-oriented care type relative to patient- or caregiver-oriented type. DISCUSSION: Instruments assessing dyad-level information could aid researchers in deploying resources at recruitment, as well as in adjusting results for data that could bias results and conclusions. Our findings support the importance of considering the recruitment strategy as well as dyadic care type as part of the recruitment process.

The Caregiver Contribution to Heart Failure Self-care Instrument: Further Psychometric Testing in a European Sample.

The 20-item Caregiver Contribution to Heart Failure Self-care (CACHS) was developed and tested in a series of preliminary studies providing evidence for the validity of this instrument in Canada. The purpose of this study was to assess the initial psychometric testing of a translated version of the 20-item CACHS in a European sample using classical test theory and item response theory (IRT) methods. This study is a preplanned subanalysis of data from a multisite, descriptive study of caregivers (n = 277; mean age, 52.7 years; 70.4% female) of Italian patients with heart failure. The CACHS-Italian version demonstrated adequate validity and reliability using classical test theory methods. Using IRT methods, test information function was unimodal with more item information in the negative versus positive regions of the latent trait. Most items displayed moderate to high discrimination with acceptable levels of difficulty. Differential item functioning, which determines whether caregivers from different groups with equal amounts of the latent trait have different expected item responses, differed based on caregivers' biological sex as did the IRT discrimination "α" and difficulty "ß" parameters. Overall, the CACHS-Italian version demonstrated similar psychometric properties and excellent reliability as demonstrated in the Canadian sample. However, unlike the original Canadian English version, the CACHS-Italian version showed significant nonuniform differential item functioning, discrimination, and difficulty based on caregivers' biological sex. Ongoing examination of the CACHS-Italian version, particularly in men, is needed as is further linguistic validation using the Canadian CACHS-English version in non-North American English-speaking countries.

Quality of life of older adults with complicated grief: A thematic analysis.

Approximately 15% of the general population has complicated grief (CG). Understanding how older adults with CG describe their quality of life (QOL) is crucial to healthcare workers especially in hospice and mental health settings. Four themes for QOL emerged from the thematic analysis of semi-structured interviews. From highest to lowest endorsement, they were Mental Function (sub-themes: mental health, joy, and happiness), Self-management (sub-themes: self-efficacy and self-agency), Social Support, and Physical Function. This study provides new information related to the relationships between CG and QOL among older adults. Multidimensional aspects of QOL can provide insight into delivering individualized patient- and family-centered care.

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.

Quality of Life of Older Adults With Complicated Grief: A Mixed Methods Exploration.

The current mixed methods study investigated what changes in quality of life (QOL) mean to older adults with complicated grief treated with Accelerated Resolution Therapy (ART) post-hospice services. An informational matrix, which included select patient characteristics (e.g., number of comorbidities, single versus multiple deaths, relationship role), four identified qualitative themes, end of study QOL scores measured by the Centers for Disease Control and Prevention Health-Related QOL Healthy Days Module, and changes in scores from baseline to end of study, was created to analyze the data. Results showed that although a history of multiple deaths may contribute to greater improvements in QOL with therapy, having at least one comorbidity resulted in a richer description and endorsement of QOL in response to treatment. This is the first longitudinal, randomized controlled trial using a mixed methods approach to examine QOL of hospice family caregivers with complicated grief who are receiving ART. This study identifies potential links of QOL and caregiver characteristics, providing nurses with foundational knowledge for assessment, care, and further research on the experiences of complicated grief. [Journal of Gerontological Nursing, 48(5), 19-26.].

PLAN: Preparing and Living for Aging Now; A descriptive study investigating older adults' readiness to plan for aging and frailty.

OBJECTIVES: Many older adults want to age in place but do not make plans. Understanding how and under what conditions adults prepare/plan ahead is vital given population aging and increasing frailty. This study examines the stages of change and experiences (personal/others) related to readiness to plan for aging and frailty. METHODS: Descriptive cross-sectional. SETTING: Community-dwelling. PARTICIPANTS: Adults aged 50-80(N = 252). DATA COLLECTION: demographics, other characteristics, stages of change, experiences (personal/others) was assessed with survey questions. DATA ANALYSIS: frequencies/percentages, McNemar test, Chi-square. RESULTS: Among domains, participants' percentages in action/maintenance stages ranged from 28.2% (cognitive) to 68.7% (financial). Participants had increased experience with others across domains rather than self. Older participants (≥ 70) vs. younger (50-69) reported statistically significant greater planning in action/maintenance stages for all domains (p < .05) with the exception of cognitive. DISCUSSION: Examining the concept of planning for aging and frailty provides a foundation for future work to develop/test interventions aimed at increasing readiness for aging.

Complicated Grief With Post-Traumatic Stress Disorder Addressed With Accelerated Resolution Therapy: Case Discussions.

Complicated grief is a significant health concern for older adults, resulting in significant psychological and physical morbidity. Elements of post traumatic stress disorder (PTSD) are often present in individuals with complicated grief. Accelerated Resolution Therapy (ART) is a brief form of psychotherapy that utilizes the techniques of imaginal exposure, rescripting of events, and lateral eye movements that may be useful in complicated grief with PTSD symptoms. Two cases where ART was used for complicated grief with PTSD are presented. Both individuals had attempted to come to terms with their loss through traditional grief therapy with an inadequate response and substantial residual grief symptoms. These cases illustrate how ART can be used to address CG and PTSD and describe situations where it may be appropriate. Clinical and research implications are also discussed.

Exercise Interventions in Cardio-Oncology Populations: A Scoping Review of the Literature.

BACKGROUND: Cardiac toxicity in patients with cancer results from treatment-related damage to the cardiovascular system by chemotherapy, targeted agents, or thoracic radiation. Cardio-oncology patients with co-occurring cancer and cardiovascular disease frequently experience fatigue. Exercise is recommended in clinical guidelines to manage fatigue during or after cancer treatment. PURPOSE: The purpose of this article is to conduct a scoping review of the exercise randomized clinical trials in cardio-oncology patients, focusing on the components and effects of exercise interventions on patient cardiovascular and fatigue outcomes. METHODS: A scoping review methodological framework was deemed appropriate and used. Key words for search included "cancer," "oncology," "cardio-oncology," "heart failure," "physical activity," and "exercise." Search involved systematic searches of large databases (PubMed, MEDLINE, Cochrane Review, and CINAHL) and hand searches of reference lists, key journals, webpages, and experts in the field using snowballing techniques. RESULTS: There were 12 randomized clinical trials included in this review. Study characteristics, accordance of exercise protocols with recommendations, specific exercise training components, and cardiovascular and fatigue outcomes were mapped. CONCLUSIONS: Recommendations for addressing the gaps included focusing on non-breast-cancer patients with cardiac toxicity risks, developing precision-based prescriptions based on various medical and physiological characteristics, and adding fatigue symptom experience as an outcome variable.

Characteristics of dyadic care types among patients living with multiple chronic conditions and their informal caregivers.

AIMS: To examine the distribution of dyadic care types in multiple chronic conditions, compare self-care and caregiver contributions to patients' self-care in each care type and identify the patient and caregiver characteristics associated with each care type. DESIGN: Secondary analysis of a multicentre, cross-sectional study. METHODS: Patient-caregiver dyads were enrolled from outpatient clinics and community settings. The Dyadic Symptom Management Type Scale was used to categorize dyads by type. Self-care, self-efficacy, comorbidities and cognitive impairment were measured in patients, whereas caregiver contributions to patient self-care, self-efficacy, caregiver burden and hours of caregiving were measured in caregivers. Sociodemographic characteristics perceived social support and mutuality were measured in both patients and caregivers. Univariate and multivariate analyses were performed. RESULTS: A sample of 541 patient-caregiver dyads was examined. The most frequent dyadic care type was the collaborative-oriented (63%). In the patient-oriented type, patients scored higher on self-care compared with caregivers; in the caregiver-oriented and collaborative types, caregivers scored higher than patients supporting the typology. The patient-oriented type was associated with younger, healthier male patients with better cognitive status, who scored higher for mutuality and whose caregivers scored lower for burden. The caregiver-oriented type was associated with older, less educated patients, with caregivers experiencing higher burden and unemployment. The collaborative type was associated with sicker patients, with the caregiver more probably to be female and employed, with higher perceived social support, mutuality and burden. The incongruent dyadic care type was associated with lower caregiver mutuality. IMPACT: In the context of multiple chronic conditions, clinicians should consider targeting any educational interventions aimed at improving patient self-care and caregiver contributions to self-care by dyadic care types.

An integrative review and theoretical examination of chronic illness mHealth studies using the Middle-Range Theory of Self-care of Chronic Illness.

Self-management, or self-care, by individuals and/or families is a critical element in chronic illness management as more care shifts to the home setting. Mobile device-enhanced health care, or mHealth, is being touted as a means to support self-care. Previous mHealth reviews examined the effect of mHealth on patient outcomes, however, none used a theoretical lens to examine the interventions themselves. The aims of this integrative review were to examine recent (e.g., last 10 years) chronic illness mHealth empiric studies and (1) categorize self-care behaviors engaged in the intervention according to the Middle-Range Theory of Self-care of Chronic Illness, and (2) conduct an analysis of gaps in self-care theory domains and behaviors utilized. Methods included: (1) Best practice study identification, collection, and data extraction procedures and (2) realist synthesis techniques for within and across case analysis. From a pool of 652 records, 33 primarily North American clinical trials, published between 2010 and 2019 were examined. Most mHealth interventions used apps, clinician contact, and behavioral prompts with some wireless devices. Examination found self-care maintenance behaviors were supported in most (n = 30) trials whereas self-care monitoring (n = 12) and self-care management behaviors (n = 8) were less so. Few trials (n = 2) targeted all three domains. Investigation of specific behaviors uncovered an overexamination of physical activity and diet behaviors and an underexamination of equally important behaviors. By examining chronic illness mHealth interventions using a theoretical lens we have categorized current interventions, conducted a gap analysis uncovering areas for future study, and made recommendations to move the science forward.

The pre-efficacy phase testing for PAfitME™-A behavioral physical activity intervention to manage moderate and severe symptoms among advanced stage cancer patients.

Fatigue and pain are the most frequently reported symptoms among advanced-stage cancer patients. Although physical activity (PA) is known to improve the aforementioned symptoms, few patients demonstrate the physically active behavior that adheres to the clinical guidelines regarding PA. The current article presents an exemplar that used the National Institute of Health's Obesity-Related Behavioral Intervention Trial (ORBIT) model and developed a behavioral intervention known as the personalized Physical Activity intervention with fitness graded Motion Exergames (PAfitME™). There were two phases of testing in the ORBIT model presented in the current paper. In Phase I testing, a standardized exergame prescription was evaluated by an advisory board and a single-case study was used to evaluate the personalized exergame prescription with personalization of the fitness levels. In Phase IIa, a within-group pre- and posttest design was used to evaluate the personalized exergame prescriptions with personalization of the fitness levels, self-efficacy, and variation in fatigue/pain. Subsequently, a complete intervention package was developed in accordance with a logic model, driven from the result of the Phase IIa testing with clinically significant findings. Currently, PAfitME™ is under Phase IIb testing in a randomized clinical trial with a control group. PAfitME™ employs a personalized approach to initiate and promote physically active behavior, to facilitate the management of fatigue and pain in cancer patients. Positive results from an efficacy trial would support the use of PAfitME™ in the management of fatigue and pain in advanced-stage cancer patients.

American Academy of Nursing Expert Panel consensus statement on nursing's roles in ensuring universal palliative care access.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

Using Appreciative Inquiry to Optimize a Person-Centered Care Training Program for Clinical Champions in Rural Critical Access Hospitals.

Person-centered care (PCC) involves shared decision-making between the individual and provider and is widely recognized as the gold standard of care. However, not all organizations have successfully implemented PCC, especially those in rural settings with limited resources. Implementation strategies, such as clinical champions, are key to PCC uptake. The purpose of the current article is to illustrate how Appreciative Inquiry, a strengths-based framework for transformational change, can be used to optimize a successful PCC champion training program. Appreciative Inquiry employs the quality improvement processes of (a) define, (b) discover, (c) dream, (d) design, and (e) deliver/destiny. Using Appreciative Inquiry, we were able to identify three new long-term goals and add supporting features to an existing champion training program. The methods developed herein could be implemented by researchers and evidence-based practice councils to improve the care of older adults in any care setting to make it more person-centered. [Journal of Gerontological Nursing, 47(8), 7-12.].

Complicated Grief: Risk Factors, Protective Factors, and Interventions.

Complicated grief (CG) poses significant physical, psychological, and economic risks to bereaved family caregivers. An integrative review of the literature published 2009-2018 on CG associated with caregiving was performed using PubMed, PsychINFO, and Web of Science. The search returned 1428 articles, of which 32 were included in the review. Sixteen studies described risk and protective factors and 16 described interventions for CG. Caregiver-related risk factors included fewer years of education, depression, anxiety, poor physical health, and maladaptive dependency and attachment traits. Additional risk factors included lower perceived social support, family conflict at end-of-life, and family having difficulty accepting death. Care recipient-related risk factors are younger age, fear of death, and place of death. Protective factors included hospice utilization in reducing fear of death, high pre-bereavement spiritualty, and satisfaction with palliative care. Complicated grief treatment was the most widely-studied intervention. Social Workers and other clinicians can use this information to identify family caregivers at increased risk for CG and refer or implement an early intervention to lessen its impact.

The Influence of Caregiver Preparedness on Caregiver Contributions to Self-care in Heart Failure and the Mediating Role of Caregiver Confidence.

BACKGROUND: Caregiver contributions (CC) to heart failure (HF) self-care maintenance (ie, CC to maintaining HF stability) and management (ie, CC to dealing with HF signs and symptoms) improve patient outcomes, but it is unknown whether caregiver preparedness influences CC to self-care and whether caregiver confidence mediates this process. OBJECTIVES: We evaluated the influence of caregiver preparedness on CC to HF self-care maintenance and management and the mediating role of caregiver confidence. METHODS: This is a secondary analysis of the MOTIVATE-HF study. Patients were 18 years or older, with a diagnosis of HF in New York Heart Association classes II to IV, who had insufficient self-care and did not have severe cognitive impairment. Patients' informal caregivers were those people inside or outside the family who gave most of the informal care to the patients. We used the Caregiver Preparedness Scale and the Caregiver Contribution to Self-Care of HF Index. We tested a path analysis model and the indirect effects. RESULTS: Caregivers (n = 323) were 55 (SD, 15) years old on average and predominantly female (77%). The path analysis showed that higher scores in caregiver preparedness were associated with higher scores in caregiver confidence. In turn, higher caregiver confidence was associated with higher CC to self-care maintenance and management. Caregiver confidence mediated the association between caregiver preparedness and CC to self-care maintenance and management. CONCLUSIONS: Caregiver confidence may play a role in CC to self-care. Interventions to improve CC to HF self-care should not only be focused on improving caregiver preparedness but also should consider the role of caregiver confidence.

Heart Failure Care Dyadic Typology: Initial Conceptualization, Advances in Thinking, and Future Directions of a Clinically Relevant Classification System.

BACKGROUND: Heart failure (HF) dyadic self-care science is advancing rapidly, as evidenced by recent theoretical work, literature reviews, and multiple empiric studies. Typologies, once considered archaic, are now viewed as person-oriented classification systems that allow a whole-system view of information patterns. This whole-system view is particularly needed to understand complex tasks like dyadic HF self-care. PURPOSE: The purpose of this article is to review the initial conceptualization of an HF care dyadic typology and the present advances in our thinking and suggest future directions for this clinically relevant classification system. CONCLUSIONS: Development and testing of the typology across 5 studies resulted in a well-characterized, pragmatic and parsimonious, person-oriented classification system for understanding how patients and informal caregivers conduct patients' HF self-care at home. The 4 types are characterized as 2 individually oriented types-type I, patient oriented; type II, caregiver oriented; and 2 relationally oriented types-type III, collaboratively oriented; and type IV, incongruently oriented. We have devised a single-item measure of typology group that can be assessed in the clinical setting. Once this information is ascertained, the clinician can personalize the plan of care to the realities of the dyad. IMPLICATIONS: Dyads that disagree on who is responsible for self-care may forego or delay action, resulting in self-care failures with subsequent HF advancement, hospitalization, and mortality. As the HF dyadic self-care science has advanced, we have come to appreciate the complexity that arises when 2 individuals work together on 1 complex task-HF self-care.